Should I return my mum to her home?

[Aquaria]

I placed my mum in a ch for respite close to where I live but 100 miles from her own home and her 2 sons. Tonight will be her 4th night in the home, and for the last 2 nights plus all day today she has been described as "very unsettled". Inconsolable. She has been walking the hall clutching all her clothes.
This completely distresses me and I am considering taking her back to her home and introducing more help in the home from a team of carers. I'm worried that she will not be the same now as she was before I took her in. Anyone else done this? Is this a bad idea? No one is prepared to advise you for fear of getting it wrong and being sued.

 

[cragmaid]

Much, much too soon to make any changes. It takes time, even if it was next door to her own home, Mum might take badly to it and equally so she might react badly to being back home.

Sorry forgot to say hello and welcome....oops

I would not gauge her distressed response to being in the home as anything other than a reaction to change, certainly the location of the care home is unlikely to have caused it. You say she is in for respite, so how long will she be there, and was she compliant in going in, or had you taken her without warning? If you withdraw her from the home, will she be returning to her own home, coming to you or one of your brother's home?
There is no way of knowing if the respite will have a permanent adverse effect on her and she also might not take to having " intruders" in her home.
Perhaps if you can give us a broader picture of how far along the Dementia road your Mum is travelling just now, we might be able to give you more in depth advice.
Take care and remember: you have not done anything wrong you know, no matter how bad you feel just now.

 

[Aquaria]

Much, much too soon to make any changes. It takes time, even if it was next door to her own home, Mum might take badly to it and equally so she might react badly to being back home.

Sorry forgot to say hello and welcome....oops

I would not gauge her distressed response to being in the home as anything other than a reaction to change, certainly the location of the care home is unlikely to have caused it. You say she is in for respite, so how long will she be there, and was she compliant in going in, or had you taken her without warning? If you withdraw her from the home, will she be returning to her own home, coming to you or one of your brother's home?
There is no way of knowing if the respite will have a permanent adverse effect on her and she also might not take to having " intruders" in her home.
Perhaps if you can give us a broader picture of how far along the Dementia road your Mum is travelling just now, we might be able to give you more in depth advice.
Take care and remember: you have not done anything wrong you know, no matter how bad you feel just now.

My mum has had memory loss for years but otherwise functions well enough to feed herself, wash, dress, and so far has managed to find her way home every time she leaves the house which is less often these days. She doesn't shop, cook or do chores. Let's strangers into her house and burns her clothes which she warms on the gas fire. It was another burning incident that caused me to take action in the hope that we could get the gas fire disconnected, and perhaps also take advantage and carry out some other necessary work. Doing anything when mum is around is impossible despite her being 85! As bank holiday I had her stay in my home for 2 nights but then took her to a ch that I had visited a couple of times. I had been looking for a suitable ch for some months now as I knew it would be inevitable. She was not aware of what was happening as is a very sociable person and was easily distracted by attentive carers. As she is demanding to be taken home that is what I am considering doing. She has had intruders in her home for some months now who have tried to cook a hot meal for her but I am thinking that if she had companionship care she may respond better than someone who takes over her kitchen for 30 mins after letting themselves in to her house.

 

[Anongirl]

Hi Aquaria, just wanted to let you know my experience with my mum. When she lived at home I tried carers coming in (eventually four times a day) unfortunately this got increasingly stressful for her as her dementia progressed and she didn't like them coming into her home. She wouldn't eat the food they prepared and starting seeing them as a threat. She was very distressed and unsettled.

We made the difficult decision to move mum to a care home at the end of January this year and though she went in very willingly at the time I would have described her as unsettled, for at least the first month she refused to take her coat off and walked around clutching her handbag. She packed her belongings up every day. Seven months on and she has settled more into their routine but her dementia is progressing and there are increasing challenges. I've noticed the clothes clutching too.

I don't think you will achieve anything by moving her back home though I can totally understand how you want her distress to stop. I'm not saying any of this will be easy but hang on in there and if you have doubts just try to remember you are doing your best to keep your mum safe xxx

 

[Aquaria]

Thank you. It's not what I want to hear but comforting nevertheless. Xx

 

[Anongirl]

There have been good times too, they do lots of activities and mum loves the company. They recently had a summer fayre and mum got involved and even had a sing song!

Sorry if I sounded negative. It is a roller coaster though isn't it? I visit mum and she seems so happy and relaxed but then I'm called to the office to be told she's been upset and aggressive. I think one of the difficult things about dementia is that it's so unpredictable and has no logic X

 

[Aquaria]

It is an emotional roller coaster for everyone. It's hard to be positive as it's not an ideal situation to be in. My mum has been described as "a tonic" for the other residents as she is a bubbly smiley lady who has got others joining in with singing. I too walked away thinking she was happy but the trade off is then hours of unhappiness. No one can persuade me that a person can feel happy if they are focused on going home for hours and are begging everyone to take them home; offering money; asking where the bus goes from etc.
I compare this situation to her previous one of being alone in her house other than regular visits from family and carers. Despite visits and phone calls (which she forgets about) she says she is bored and lonely. The question that keeps popping into my head is "is trying to deal with boredom and loneliness a valid reasonable reason to place someone in a ch?" It was a real safety issue that made me take the action but if that issue is now resolved, should we place her back into her previous situation? It should be just about mum's needs but it's hard to disregard the needs of her children who all have our own health, work and family difficulties.

 

[Nebiroth]

I think the question you must ask yourself is this:

Have the circumstances that lead me to decide a care home was the best place for my mum changed?

If they have not, I suggest the answer is no, she should not return home. It is very early days and there is almost always a period of being unsettled.

You say it was a safety issue that lead you to take the decision - can this actually be fully resolved with your mum at home? I hope you don't mind me saying, but it sounds as though you are trying to convince yourself as you are, understandably, wanting to make your mum happy again by having her back home.

Someone at home is never going to be as safe as they are in a staffed care home. Even with the sort of maximum care packages available, your mum is going to be on her own a lot. Unless you employ full time or live-in care.

Sad to say, dementia is progressive; she will get worse and in unpredictable ways. You might move mum back home and find her just as unsettled - or even demanding to "go home" because she no longer recognises her own home.

And you might go through all the distress of moving her into a care home, then back home, then find things are no better or worse (either now or in a few months time) and then go through the whole thing again.

It is also quite possible that your visits provide a trigger and that she is much happier for the rest of the time.

 

[Witzend]

How is your mum's short term memory? I ask this because I have known personally, and heard of other cases, where despite a lot of time and visits from carers and family, people will still say they are bored and lonely, because they cannot remember that someone left just half an hour ago. (In my mother's case, just a few minutes ago). Sometimes, because of memory issues, no amount of visits will be enough, from the person's POV.

It is a very hard decision for you, but if you feel your mum will now be basically safe at home and more carers will help, you can only try it and see. However you may find that sooner or later there will be other issues cropping up, maybe wandering, and you may feel that 24/7 care is the only safe option.

As for what you say about 'this should be about Mum's needs, but it is hard to disregard the rest of the family', well, I do think other people's lives are important, too, and if the family are finding it very difficult to cope with the amount of time a person wants spent with them, then this must be taken into account, too. Also, it is perhaps important to differentiate between a person's needs, and their wishes. Someone with dementia may often wish for a son or daughter to be with them all the time, but in practice this will just not be possible. It is also true that very often a person with dementia will no longer be able to take anyone else's needs or responsibilities or convenience into consideration. It is not their fault, but they simply cannot understand that family cannot be there as much as they would like.

I do know how distressing it is when someone is constantly asking to go home from a CH. There was a lot of it with my mother, for some time but we did not have any choice because she was no longer safe to be left at all. We had put the decision off too long anyway - so it was just a case of steeling ourselves - and it was very hard - and lots of little white lies - anything that would keep her reasonably content for the moment, since she would never remember anything we said for more than a minute or two, if that.

All the best - I do hope you find a not-too-distressing way through it all.

 

[Pringle]

Oh I can so relate to how you're feeling

My mum lived alone with no carers until one month before we decided on a care home for her. This decision came suddenly to us as she had wandered from home and fell in the cold and rain one dark evening at the beginning of February this year. She hadn't been looking after herself properly for a few years. She'd lost over 3 stone in weight and was miserable, lonely and depressed. She stayed in bed until lunchtime but this extended to mid afternoon for the last couple of months of her being at home. She always worried about things when she was home alone and we always had distressed phone calls, particularly through the evenings...mainly about something she was looking for and couldn't find or wondering why my Dad wasn't home (he passed away 5 years ago). My sister and I took it in turns to pick her up daily and take her to our respectives homes for company and cook her a decent dinner. She rarely wanted to go back home, often saying she'd rather put her head in a gas oven!

So there's a little background. It was stressful times for all concerned and we were constantly worrying about her and as she was so miserable being in her company was a sadly not only stressful but a chore. She went into the care home initially for one week for my sister and I to decide about her future. Like your mother, she wouldn't settle. She wouldn't take her coat off, wouldn't unpack (and packed again if someone unpacked for her). She was anxious and wanted to go home.

This was stressful but we noticed that she liked the company even though she was fighting against it. We also felt that a huge weight had been lifted from our shoulders as we didn't have to deal with constant worry and phone calls. The concern changed into the thoughts that you are feeling and I'll be honest to say that they don't really go away. However, 7 months on and my mum is still in the care home, there is no going back. She has family visiting almost daily and the difference is that she now smiles when we visit her (she rarely smiled at home). We look forward to visiting her, I feel I have built up a relationship with her again and don't feel resentful towards her and I know that must sound awful! I look forward to visiting her and the time is precious. As for mum, I know she is being cared for and during the day she seems content. She has company, there's always lots going on for her to watch and she joins in a few things that I would never have thought she would. She only thinks she's been in there a week and still thinks she's going home soon, I don't think that will ever change. I know she gets distressed and anxious during the evenings 'sundowning' but this was happening at home but for different reasons. It's reassuring to know that when this happens she is safe, in a nice warm environment with caring people to reassure her.

My guilt now is not 'would she be better back at home?' as I know she wouldn't. It has changed to 'should she come to live with me so that i can care for her 24hrs a day?'. I know I couldn't and it's not going to happen but I do worry that I will have that guilt that I haven't done my utmost for her. I think whatever the situation, we will always carry guilt and think that we should do more. We do have to remember that often it isn't just us and our parent but the implications on the wider family too.

Good luck in your decision, it's so so hard and only you can make the decision. Just remember that you can only do the best you can at the time and these decisions will change as this horrid disease progresses x

 

[starryuk]

As for what you say about 'this should be about Mum's needs, but it is hard to disregard the rest of the family', well, I do think other people's lives are important, too, and if the family are finding it very difficult to cope with the amount of time a person wants spent with them, then this must be taken into account, too. Also, it is perhaps important to differentiate between a person's needs, and their wishes. Someone with dementia may often wish for a son or daughter to be with them all the time, but in practice this will just not be possible. It is also true that very often a person with dementia will no longer be able to take anyone else's needs or responsibilities or convenience into consideration. It is not their fault, but they simply cannot understand that family cannot be there as much as they would like.

I think you are so right, Witzend. Very wise and well put!

Aquaria, my mum was the same, unhappy in her CH at times, but she was also unhappy in her own home, thinking she was alone and abandoned when people were visiting constantly. She just could not remember.

I went through the terrifying prospect of not giving in to my mum's demands (eg buy her a new car so she could go and visit her relatives, when she was no longer safe to drive.) but I had to put her safety first. I thought of the guilt I would feel if she had an accident at home or in the car.

It is very sad, but when our mums do not understand their own needs, we have to take over and make those decisions for them. Just as we did for our young children.

It is a heartbreaking time for you. I am sorry you are all going through this..

 

[Aquaria]

Thank you all for your replies. It really is comforting to read about your personal experiences. It is true that I need to be convinced that mum is needy enough to be in a ch, and it concerns me that she is there for our convenience. I know that I think that my mum and circumstances are not like everyone else's. As a problem solver I don't look for generalisation and don't believe in one size fitting all. I always look to find the best solution to a problem where I am privy to ALL the details. It's terrible of me but it annoys me when people say "it's the best thing" but don't know mum or us or her situation having not been directly involved. It seems that their concern is more for me or for some how they too will be released from the "problem" indirectly.

Anyway, I had expected to take mum home today but when I turned up at the ch I found her to be involved with other residents, visitors & carers and she seemed happy. Not prepared for that. I decided to try a trip out of the ch, to the shops, and to my home. All felt normal but we stayed out too late. She was so "normal" that when she was told she was staying at the ch and not going home as promised - through white lies - she looked so betrayed and hurt. She's not so far gone that she can be tricked into believing that she was "home". Her face revealed her confusion when faced with her belongings, photos etc.

So another night of crying and that heavy pain in my heart for my beautiful mother who doesn't deserve to suffer so much. But...it seems to be getting easier, I think.